Portraits of American’s Living with Multiple Chemical Sensitivity

Danish photographer Thilde Jensen came to New York City in 1997. Six years later her life and career was cut short by a sudden development of severe Multiple Chemical Sensitivities (MCS). The urban life she had previously navigated with ease transformed into a toxic war zone. Her immune system crashed, forcing her unto a survivalistic journey, unravelling the comfort and construct of her previous life. The ensuing years were a lesson in basic survival – camping in the woods, while wearing a respirator when entering supermarkets, doctors’ offices, and banks. To her surprise an otherwise invisible subculture of people emerged who shared this isolated existence. Her photographs are a personal account of life on the edge of modern civilization as one of the human canaries, the first casualties to a ubiquitous synthetic chemical culture. Of her series ‘Canaries’ Thilde writes:

‘Since World War II the production and use of synthetic chemicals has exploded. During the course of an average day, people come in contact with a host of chemicals – Just walking into a supermarket one might be breathing as many as 20,000 different synthetic compounds. As a result of the prevalence of these synthetic chemicals, it is believed that more than ten million Americans have developed a disabling condition called Multiple Chemical Sensitivity, (MCS).

MCS is a condition where our immune and central nervous system goes into extreme reactions when exposed to small amounts of daily chemicals like perfume, cleaning products, car exhaust, construction materials and pesticides. In addition, some people also react to light, fabrics, food and electromagnetic fields as emitted by computers, phones, cell towers, cars and florescent lights – making life a near impossibility. Many people with MCS are forced to live in remote areas in tents, cars, or trailers. Others are prisoners of their homes, with advanced air filter systems to keep outside air from contaminating their breathing space’.

This IS MY WORLD for the last 12 years. It is isolating. Chilling. Scarey. Lonely. Undetermined. And becoming more populated with each passing year.

MCS is real. And for many more people, who have no idea of its existence, it will become all TOO REAL, very fast.

Educate yourself. You CAN avoid becoming another victim of MCS, but you must know how to do so and you must act upon it.

As well, MCS could end in as little as 6 months. IF, the world would cut back on synthetic chemical use by 50%. End completely, if we broke the habit completely. But – the businesses say – ‘Where’s he profit in that?’ And that my fellow humans, is THE REASON more of you will join our isolated community.

I’ve only recently discovered this site and as an MA student I’m finding it incredibly resourceful and inspiring. I had no idea that MCS existed – I’d never even heard of it. these portraits are incredibly and it’s led me to investigate what MCS is all about. So, bravo, this project is incredible!

I have this. These photos are so real. There is so much that isn’t written, but it’s impossible to write it all. It affects every single aspect of one’s life. It sucks.

Annette Tweedel

I have been having MCS for many years. It is very difficult to go places. Some buildings I cannot even go in. People need to be educated about chemicals. We try to do that, but we don’t know if it is working. Whether it is perfumes, colognes, washing powder, fabric softener sheets, air fresheners, etc.
We are living in Louisiana and we are in need of a chemical free environment.
People need to be made aware.
Daniel, I appreciate the fact that you are understanding. We need more people like you. Please, do the research Daniel, educate yourself and help us spread the word about chemicals.
Thank you.

Rita

My son I developed MCS after exposure to malathion sprayed into our home by the health authorities in August 2010. The suffering is unbelievable and continues. Very few people know about MCS or even understand it.

Dina Liljeholm

I have MCS and wish nobody ever had to get it . It’s so isolating and can be very stressfull to keep alive, but we mustn’t give up. I have had this condition for about 18 years. I’ve been homeless with four small children for two to three years because finding safe housing is very difficult especially when relying on government housing assistance,ect. I am also electrically sensitive. Even typing this at the library is making me sick. It’s hard to go any where for any length of time without feeling that I cannot breath. Don’t give up and I’m rooting for you all.

These are amazing, they tell a true yet hidden story about our society and the ills set to haunt our futures. Problem is, there are many of us with this and sometimes it seems like the world keeps turning its back on us, like we don’t exist. I live with this, and I blog about it @ the-labyrinth.com

Annette Tweedel

Hi, I wrote last year on this blog. Well, we found ourselves a healthy place to live. We moved out of Louisiana in July of last year and we are now living in Tucson, Arizona. But people still need to be educated. We are doing a walk-a-thon here in Tucson, Arizona on May 5, 2013, through the Jennifer Parker Foundation. I hope I worded that right. The Jennifer Parker Foundation pays to put it on. It is to raise awareness and funds for a healthy place to be built. If you want to know more about the walk-a-thon just go to the Jennifer Parker Foundation website and click on the link.

I have lost everything and “everyone” due to MCS. I am 50, had to move in with my father as I lost my home, job, car and his house was older, so it seemed to be safer. Now, I have nothing. I try to function as a recluse, but cry every day because that is not who I am. I applied for Social Security, but must wait one year for even a court date. I am allowed $200 a month food assistance through the state, but usually by week 3 I have nothing left, as the food I must eat has to be organic and is so expensive in Northern Minnesota. I also have many other diseases now, along with severe arthritis in my back and neck, a brain aneurysm and much more. I have lost all of my family except for my father as none of them “understand”. My daughter doesn’t even let me see my grandkids anymore because I told her she couldn’t keep coming over with perfume and smelly shampoos. It made her mad, so she told me I was out of her life forever. And she meant it. There is no life lonelier than living with MCS, doctors think you are nuts, people don’t understand and being penniless and homeless is tough. I haven’t had 3 cents to my name in over a year. I can’t even buy the masks I need and my state health insurance won’t pay for anything. If I had the courage, I would just end it, but I love my father and could not do that to him. I only wish there were a cure……But most days, I wake up and just say Dammit, why did I have to wake up today? To just go to sleep and never wake up to this nightmare would be my ultimate dream.

Joni

I’m writing a research paper for my grad class titled “Healing our Built Environment” and I’ve recently, while researching toxins and harmful building materials, stumbled on to MCS. This is incredibly disturbing and I feel deeply for you all – I’ve never heard of this before. I’m studying sustainable design and have a passion for just the title, healing our build environment to provide a safer, healthier world for future generations. We have brought upon these problems, and MCS, ourselves by allowing the use of these chemicals and synthetic compounds to perpetuate the problem. Your stories must be told and you’ve given me more motivation to dig deeper into the problem. Be well and don’t give up. (ANY reliable resources you can provide me with are greatly appreciated.)

Molly

Annette Tweedel can you – or anyone else in Arizona – please email me! I am interested in Tucson (am in Oregon and can’t handle the cold winters) but really afraid of safety issues, need someone trustworthy to point us in the right direction (am a single Mom).

And apologies… these are really awesome, intriguing shots… I would be interested in your book you are putting out… not what I expected, so much shown is usually ‘sad’ based, but these get the despondency message out (that this illness causes in sufferers) with some beauty and humaneness added-in. Really nice. I’m a novice travel photographer so are into these kinds of things 🙂

For those of you with MCS who have been struggling with the disability system, there is hope. I am an attorney with MCS. About 10 years ago I had to close my regular law practice, where I had ironically been doing a lot of disability law along with workers comp and PI, and move my practice into my home. Since then I have been helping people all over the USA who have MCS obtain disability benefits. We do everything by telephone, email, and mail so your location doesn’t matter. It’s not easy, and you have to get the right people to decide your case, plus put forward the best available documentation for your claim. Nevertheless, there have been victories.

If you are interested in pursuing this, check my website and fill out the online form.

Julie Collins

Hi. I’ve been struggling with MCS for the last year especially. I live in traverse city michigan, and working at (Oryana) a food coop with alot of organic food and built the green way however, I can only work 2 days a week there because of being constantly exposed to perfume and laundry/dryer sheet chemicals etc. thanks to the public. There are a few shoppers that come in wearing masks due to MCS. I know atleast 8 shoppers that are sensitive and worry for them too! Another big concern is lawn chemicals-pesticides they spray on golf courses, lawns, parks, on the cherry trees here. The air here must be so toxic. I started a petition on(change.org), against lawn chemicals and feel confident with determination and support to get a ban on these very toxic chemicals. It’s not just us. Children, our companion animals and the innocent wildlife stuck outdoors in this mess are suffering too! Start something in your cities too! That’s the only way for change. It’s up to us! Let’s get the chemicals out of stores, our homes and outside. Best healthy wishes, Julie

miriam

Hello:
I am a fifty one year old women who developed MCS in my early twenties. I continue to work and try to make a contribution despite challenges. I don’t quite get the public’s and medical communities lack of understanding. There are sanctuaries for chimps, for old horses, for all kinds of animals, but none for people who just need healthy places to live?

Julie Collins

Miriam,
It’s a good thing there are places for animals suffering too! And your right we do need healthy places to live and the public can’t keep shunning us away.And more and more people and children are developing these symptoms . So as long as it’s taking people to realize the seriousness of this,they can’t ignore it anymore,because this is very real and concerns their health too!. This is something humans have created so it’s up to humans to change their toxic ways and make it better for all that inherit this planet. We need a movement of some kind (All 50 states),where those of us suffering with MCS can force change (getting lawn and food pesticides banned,getting chemicals out of clothing and detergents etc.,contacting auto dealers to go green by using safe organic interior along with fazing out vehicles running on gas. I understand how difficult it is living with this condition so we have to ask the public (those free of these sensitivities) to help us make a change. It will make their lives healthier too!PEACE

I have MCS (along with Central Sensitization Syndrome). I have noticed a difference since I started “detoxing” and “cleansing” a year ago. My sensitivity is still there but the reactions are not as immediate and they don’t seem to be as severe and long lasting. For instance, smelling perfume would immediately give me a migraine (well, within 5 minutes). Now after doing several detoxes, I may get a headache after being around it for 5-10 minutes. It is at least some progress. These pictures are great too! I started wondering about the chemtrails from the planes recently. I feel like the only way to truly avoid this is to live in an organically built house with nothing that will off gas and have 6 $1000 air purifiers in each room of the house and an ultra violet light virus/mold killer on the furnace. 🙂 I’m obviously going to be exposed to some chemicals no matter what I do so it is best that I continue to detox on a regular basis. Thanks for the article and the photos! Great work!

Mario Casella

I suffer from very severe mcs and I have to find somewhere where I can foil up a room or live outside I am in Tuscon AZ at a mans house whe also has mcs but not nearly as bad, he rents a room for $300 a week & I cannot afford to be here but a few more weeks. I was stranded out here when I was told to leave everything I owned at my fathers house because it was moldy & come to these peoples house in Arizona & they would rent me a room that would be made safe for me if I couldn’t tollerate it, or find me a place I can tolerate. They ended up putting me off their property with nothing without warning! And refused to help me with anything. I can only tolerate a foiled room or porcelain trailer, I am 38 and wat to live. I am really scared & have nowhere to go.

Dennis Mudloff

It is only through awareness that things will change. Thilde is a brave woman for shining a light on what some have described as the plague of the 21st century. Woe to mankind if the warning signs continue to be ignored.

I too suffered horribly for many years from MCS, EI, CFS, depression and multiple food allergies to name just a few of my diagnoses. Avoidance was my initial and ongoing approach for years while I researched everything I could about all of my conditions – which all started after moving into a new home, that was in 1995..

Now in 2013 I am:

100% MCS free
100% food allergy free
100% depression free
100% EI free
Have excellent energy levels
I can eat out in any restaurant or home and eat all foods without reactions.
I can enter and stay in any room, building or anywhere without skewed responses.

My note to all suffering with the above conditions is:

1. Continue becoming educated and avoid triggers. This will allow your body time to stop hyper vigilance and reacting and concentrate it’s energies on repair and healing.

2. Utilize strategies to reprogram your brain and body to stop mounting skewed, excessive and unwanted responses. This may require a paradigm shift in thinking.

I have been able to duplicate my ‘symptom free’ status with clients. I share my protocol in my book THE WHOLE PERSON WELL-BEING EQUATION which is now available globally on Amazon.

Is there anyone out there suffering from MCS who has found anything that helps? I suffer from this as well and have been researching online but it seems like the only people with answers are the ones who want to sell their books. It’s hard for me to put my faith in anyone who wants to profit from another’s suffering. As much as I’ve suffered with this, if I found answers I would give them away to whoever it would benefit.

Cindy

Susan Burke

Hi, I am one who has been suffering from MCS, some food antagonists and lately EMF sensitivity. But I have found a cure and I want to share it with all I can. It is my responsiblity and it came through a book that is available now called “Healing from Severe MCS and EMF Sensitivity” by Gary Prader. I am not making a dime. But two things I did, after two years of clearing the crap and detoxing, meditation, yoga and acupuncture. I started having cranialsacral therapy two a week, and I ordered a system by “EArth Calm” which sets the frequency of the home resonating at the same level as the earth. I had a dramatic and instant recovery. I feel amazing, and would love to share my knowledge of recovery. I was very sick from MCS and I was no fun to be around, I was not going to settle for that, as it was never my personality to begin with. Cranialsacral treatments align the spine and adjust the skull to free energy from trauma or pain that we have digested and not dealt with. This is a reactive disorder mostly due to stress from an experience we either forgot about or tucked deep inside to later cause us illness. Once we are in a fearful state, we can trigger the reaction in an instant, because we are in hyper mode. Anxiety, panic and fear are at the base. But the release of pent up sick energy is the cure. Start treatment instantly. Go organic. Take supplements. Detox the system, naturally and with far infrared saunas. Juice daily. And pray morning, noon and night for courage, wisdom and healing. I did and I am cured. My new mantra. I have no more MCS. Also use EFT, tapping, this is an incredible self-induced therapy and it works. Trust me. Just tap a pressure point on the head or chest area, stiffly, and briskly while counting to yourself, lighten the touch after two or three minutes and do it as often as necessary. It deactivates the central nervous system and calms it down. Also lay on the earth everyday or walk barefoot whenever possible. I will be glad to answer questions. I am a 54 year old mother of 3, married 18 years, living in a quaint little town all my life, that I will always call home. Good luck and be cured. Don’t attach this illness as your way of being in the world.

Annie Carvalho

Oh my god, this is my life!

In response to Cindy, I did Ashok Gupta’s amygdala retraining and it did help a bit. I’m able to go (quickly) into public places now. But I lived in my car and camped for many years while I fought a disability case and finally won. God bless all those canaries out there. The good side of the coin is that our bodies will not be tainted by all the chemicals so maybe some of the environmental illness bullets will miss us!

Ann Zimmerman

The above and the blogs below are resoundingly true. “Allergic To Life”, in Nov.’13 Discover magazine describes the disease. Is there an M.D. in Florida who treats this?

janice

I can identify with many things I read on this site. I am 52 and have been sick in one way or another all my life. but nothing prepared me for when 6 years ago I moved into a house that almost killed me. I have been working with an NAET practitioner for the last 2 years and I believe she saved my life but I continue to be ill. what I am really struggling with is the will to live. I have lost everything and I have no support system, no one to talk with. on days I am feeling well I believe that I will get better but I have more bad days than good and when I feel bad my emotions plummet and I just don’t want to live like this anymore. I have tried to find anyone in my area who can relate but I can’t find anyone the people I do have in my life are sick and tired of me being sick and tired. I feel that some don’t even believe me. I don’t know why im writing, im just desperate to talk with anyone who understands. thanks jan s

janice

hi cindy, I have been working with a NAET practitioner for the last 2 years, it is working and she has litereally saved my life. my biggest struggle is not having a support system, I am going through this totally alone and no one understands that has been the hardest part for me. ps I feel the same way about the book thing. I have been detoxing for just about 2 years, I moved out of my home one year ago my home was what ultimately tipped me over the edge but I know now that it has been many things that build up to it. I have used biofeedback as well but the detox was to much I got very ill, NAET takes time but has helped me sooo much. they have a website so you can read all about it. the dr. that developed NAET has written books as well but it is not necessary to buy them to get answers. you can put in your zip code and find a dr in your area that performs NAET. in addition, just vitamins I can’t even sauna yet I actually had one at my house but I still get to sick but as I get more of the chemicals cleared and get stronger, then I will be able to use that as a tool as well. its nice to have someone to reach out to I wish you all the very best in your search for health..x jan

janice

i agree Julie, i live in south florida the king state of pesticides but if you don’t use them you are overrun with bugs. even when you use them, you still have bugs.

Hi I did try to get disability. I only work 2 days . I was denied benefits I have been forcing myself to go to work, even when I am very nauseas. Today I called in because of a migraine I picked up from the day before and exposure to perfume , cologne etc. I feel like it’s getting worse. It’s funny, I have always been healthy, I am a vegan, eat organically, but I think the pesticides they spray here and chronic stress have caused this. Not the best combo. Thanks

Panda Monium

Beats chasing ambulances.

Bettaboy

This is an old thread but I am responding in response to Ashok Gupta’s Amygdala retraining. I have a background in both biochemistry, chemistry of arts, (mother in medicine so grew up reading her medical books, RN who worked for four neurosurgeons whose text she gave me after I became ill). And a full degree in Psychology where in my studies we studied brain chemistry, toxicity of Rx (all “side effects” are technically called toxicity effects) and was to obtain my MA NYU in OT (never used Rx since age 18 when I could make my own choices) but collapsed and could not complete it. (studied human physiology – all the various systems of the human body, enzyme, brain, organs so on).

These toxic chemicals found in common household, and personal products are well known in industry (with major protections in place – yet often not). Because they are made by the pharmaceutical industry (bayer asprin, bayer pesticides and thousands of other examples) it is hard to buck the tide as they have major filtration into government bodies. Do you really think the “fragrance” on the soap for dishes or detergents are made from expensive natural oils? (not – petro chemicals no one else wants).

It’s like breathing gasoline in, day after day, or through your skin (our largest organ) and one is slowly poisoned and the various complex systems of the body break down (hence the “spreading” phenomena”). Rx industry then has a label (which took a long time and code to get reimbursed, now Rx to “cure” this poisoning) such as FM CF (now CFIDS) and so on. I am in a non medical freedom state now and my gyn said we had better change MCS to “sick building”.

Having research, statistics and other backgrounds I was able to read research papers, (Dr. Grace Ziem had a research arm as well and I bought 2k worth of the research). Dr. Majid Ali (the Canary and Chronic Fatigue – rants against AMA “medicine” – brilliant researcher, the oxygen and castor ideas were from me (Gerson and AIDS newsletter but he did even more research and post the therapies online). He also does Lymbic retraining and did so decades ago – we patients would be hooked up to a machine (bio feedback) to assist in this. (or one can learn to meditate).

I mention this as on many MCS (so on forums) this is now touted (and especially traditional MD’s, Psychiatrist (all MD’s) back him up – his web site sounds like a pyramid scheme – become a counselor, train others). Many will not post those who have not good results or even doctors trained in chemical injury, neurotoxicology such as Dr. Grace Ziem (started in Viet Nam with Agent orange still (deet) to be found in mosquito spray)

I note on his site he mentions “why do some develop MCS when other do not”. Due to each person’s unique make up (and all are unique) some develop the obvious, others develop cancer, and other dis eases. It reminds me of when AIDS was thought as God’s revenge (I took care of many with this and same symptoms as the virus destroyed the immune and other systems – symptoms I would have later. Or a friend (when I was still well and in collage) who had Lyme and it’s all in her head. It is true many who were abused as children might have a propensity to develop this or that (brain structures altered due to adrenal/cortisol release) but that does not mean these highly toxic chemicals, in one large dose or accumulated over time (the body metabolism can not even metabolize them so many are stored in adipose tissue (fat cells).

So the body can heal to the degree it can (avoid all toxins, eat what the cells, body needs, sound highly quality foods, and at end stages I’V.s of nutrition.) All sorts of therapies to eliminate the toxins and rebuild.

These chemicals are highly toxic, made by the Pharmaceutical industry and labeled as “fragrance” when they are made from synthetic petro sludge (all can be looked up even on oil refineries web sites – what’s left over is sold to the “fragrance” industry. One can obtain the MSDS (often hard they do not want one to know what’s in products) and, the EPA, FDA are highly in step with oil and Rx companies – corporate American (only 11 states have MEDICAL freedom laws and regular MD’s can lose their licensees if they do not do as trained in medical school.)

But some are so damaged they die, 79 million (from construction workers and other industries have chemical injury (my preferred term so as not to be confused with “sensitive or allergic” (few real allergies – Read Allergies Disease in Disguise) – Labor Board statistics at the time I did research 1995) Many die from larger exposures (my own chiropractor mentioned a family he knew where all died after pesticides by the landlord were sprayed in their home without them knowing). I remember using “bug bombs” in NYC for the roach infestations – breathing in that horrific toxic stuff (ignorant then all did it).

The problem is, yes the body can heal, I am living proof of that. I went from one step from dead, too many symptoms to mention (vegetative, organs breaking down, *”paralytic”, could not cognate (no brain functioning ie could not form a thought, eyes rolled left to right and many other neurological symptoms.) Interestingly the other part of the mind (intuition so on) was even more functional (I guess as I was “still” as in meditation) so I was aware and my friend who took care of me (Gerson, Max Cancer therapy as a core, other holistic therapies at different stages over time).

*(these class of chemicals both anesthetizes and sensitize (damage to cells so more exposures cells (all functioning of complex various systems) break down further until it does not take much to have a “reaction”… like being punched again and again, eventually all bruised and bloodies – a small tap with HURT a lot.

My building was in a fire, worst fire in America at the time due to multi thousands of violations, and the violations continued with illegal renovations (and each time a tenant left meaning decades). It was a old prewar building so vents from one floor to another would mean if floor stripping or “porcelain” (decades of ceramics/arts and arts chemistry, not porcelain but industrial level toxic epoxy) tub resurfacing was done in one apartment (no OSHA or MSDS standards, illegal aliens were used and they could not even read the back of the can “avoid breathing or central nervous system damage and even death can occur” (CNS, brain and nervous system).

There were as well renovations at many works sites along with a generation exposed to highly toxic side stream smoke (even when banned people still smoked inside). Hydrogen cyanide, carbon monoxide, carbon dioxide are highly poisonous gasses, the body uptakes them over oxygen (preferential upate) and damage (along with other chemicals, rat poison so on) starts. So multi sources until I woke up, unable to move, blood all over (took years to get to this stage as I tried to “hang on”) red urine (chemical porphyria (unable to produce red blood cells) and more. head to toe pain inside and out even inside my bones.

I guess my point is yes even the brain (all are connected, healing as to include the entire body, mind soul) and environment as well, why would anyone want to be exposed again. (I am still as I am isolated, with no one to shop for me anymore). If I am on the elder bus and someone has cologne/perfume I am sick again (and take as best nutrition as I can later). I used to wear those huge masks/charcoal masks but hard to breath.

And now I am fearing homelessness, as every where I go (even dentists) here huge sprays of fragrance, carpet shampoos so on and need a medical note (in non medical state) to state steam clean only (while the person smokes – manager ).

Smokers btw once they quite and start healing, are those among biggest against second hand smoke (Bloomberg for one in NYC). Their immune system is starting to heal (what Gerson called the “allergic” response) and now says your making me sick!

Ditto for this class of chemicals. Many are in stage two (with harm being done) and don’t notice anymore.

hilary lassen

my colleague wanted DoL OSHA 300 a few weeks ago and was informed of an online platform that hosts lots of fillable forms . If people require DoL OSHA 300 as well , here’s a osha 300a log form